Born to deal with dementia

It certainly wasn’t in my conscious life plan that I would end up having power of attorney and being responsible for the care of my mum as she has increasingly bad dementia. Two years ago she moved in to a care home for some respite, and has ended up deciding to stay there.

I have found it heart breaking at times to witness her memory deteriorate. So as well mums care, my other priority is to look at, understand and manage my own reactions to her and the illness, and see what it triggers in me.

For me, the better I can manage how I am “triggered” by her behaviour, the better the son and carer I can be for her, and also it is the way I live my spiritual path; to find ways of becoming more at peace with the places within me that I am not at peace with.

Unsurprisingly, one of the biggest triggers for me has been a sense of helplessness and even tipping in to despair at times. I have felt unable to change anything, to help mum, to enable her to see things differently. I have often felt like I have failed.

A couple of months ago, she had a really bad couple of days, and when I spoke to her on the phone she kept saying that she was ill and that no-one believed her and they wouldn’t let her see a doctor because they thought she was putting it on. I went over to see her and she was saying the same things. The home did get a doctor to see her, and as the doctor was writing up notes at the nurse’s station after seeing her, I went in to see mum. “They won’t let me see a doctor,” was the first thing she said to me. I felt devastated. Here she was, having just seen the doctor, but unable to remember, surrounded by care, but feeling no-one was caring for her. I just cried.

But I had a bit of a breakthrough ten days ago.

Mum was 85 on September 24th. I had arranged with my cousin Peter to go see her at the care home in Old Windsor, and then take her to Marlow for lunch. Mum was born in Staines and used to go on family holidays to Marlow, so it holds a special place in her heart.

It’s hard to know what mood she will be in, and she has also been agoraphobic, so sometimes she simply doesn’t want to leave the care home because she is scared to go out.

This time, gladly she was up for it, so after giving her presents, a balloon and cards, Peter drove us to Marlow and the three of us had a lovely lunch in a gastro-pub. Mum told the same stories over and again, but she was happy to be with us and to be in Marlow. We drove back to the care home and they had baked a cake for her with her name on and the staff and other residents sang her happy birthday. It was a happy time.

I then went off for an hour to decompress, have a break and run a couple of errands, and then returned to the home to have a cup of tea with her before I headed home to Finchley.

When I got to her room, she looked up at me and said, “No-one has wished me happy birthday. Nothing has happened at all.”

At this point I instead of feeling crushed and defeated, disappointed and helpless, I felt different. I knew we’d had a lovely time, even if she had no memory of it happening. Instead of feeling upset, I felt OK, and accepting of her response. I could just accept “She has no memory of the lovely time we had,” without needing to be upset about it or change it, or label it as sad or tragic.

Something had shifted in me, I felt truly accepting and more at peace rather than resigned and helpless. In a funny way, I can see that mum and her illness are my teachers, helping me to see the places in me that I am not at peace with.

The “upside,” if I can call it that, of the dementia, has been that mum is now often more open and expressive. We now tell each how much we love each other every time we speak by phone and I visit. She tells me how grateful she is for keeping in touch with her and that I make her day when I call and when I go to see her.

For all that we have lost, there have been some wonderful gains too.

Have you been through this experience with a loved one? I’d love to hear some of your experience.

Thanks so much Mike – lovely to hear from you – I will certainly check out Trevor – learning how to deal with dementia already big and it seems set to get an even much bigger issue as more people suffer from it – we are going to need all the help we can get!

Thanks for sharing this story from your heart Nick. My Mum has Alzheimer’s disease and it has broken my heart and in many ways restored it.
Most times she doesn’t often recognize me or my husband. Conversations are random sometimes meaningful other times..an outpouring. At first I was devastated to see my chatty friendly Mum so confused. It’s still tough..
I believe she communicates with many old and new parts of herself..as well as the Spirit world. I accept her unconditionally as she is, even when she is shouting or upset. It can be very challenging. I give myself time to grieve her old self and lots of love to my inner kiddie. This has gifted me with being fully present with her as she is.

Yes I can relate to your stories Nick. I recall when I was just about 10 or 11 my dad got Alzheimer’s it started slowly but over a few years became more noticeable and he would always be going off and getting lost, There was little in the way of care sow e had him at home for around 8 or 9 of the 11 years he lived with this condition It was ad to see how he started to suspect we had stolen things and would get really angry and in later stages he would get violent and one day when he attacked my mum I leapt on him and dragged him off and really had a feeling of anger and hate towards him. When other of my friends were doing homework or spending quality time with their fathers we were driving the countryside trying to find where he had gone this time. On some occasions he had gone to London with his bike as this is where he was born and one time was found cycling up the M! so good ness how far he had cycled, Mentally he was deteriorating but physically he was fit When finally they took him in a home I could not cope with going there until the night we were called in because he like may residents was quite ill and he died the following morning, I recall being in tears and just hugging my brother. It is interesting to now look back ad see the effect this has had on me happening at a really important stage of my development. I dreaded having to do this form my mum and as you know back in 2003 my mum was diagnosed with Lewy Body Dementia and the need for looking after her and caring began. We had nearly 8 years of watching her decline bit at a time also I do recognise much of what you speak about ad of a care system that seemed broken and the challenges and almost full time commitment I found myself with making sure she got at first the right care at home then in care homes and dementia care homes. It seemed like a none stop battle and when she died nearly 8 years ago now I was left with a huge space in my life as this had consumed a lot of my time. Looking back there were some amazing lessons I learned and many great experiences. A feeling of helpless ness did prevail though as up to this point I had been able to sort everything out and fix it but here I could not. When she did die 6 months or so after we moved to the midlands there was a mix of feelings from relief to pain and the realisation my brother and I were now orphans! Anyway over the years since then I have worked with letting the feelings of loss subside and the feelings of having had a wonderful mum that had given me the best start in life she could and in many ways she is still around just in a new dimension. Thanks for having the courage to share your story. I can certainly agree with having many times of tears sometimes quietly in her en-suite and sometime openly with her there.

Thanks for sharing your journey Jon – gosh, what a journey it has been – have you written about it anywhere other than here? I am sure many people would benefit from hearing it. So many people are going through this journey today

That’s touching Nick – straight from the heart. I’m sorry to hear about your Mum – truly – that’s not easy. Sounds like you’re being called to just be in the present moment with her, where memories and future don’t matter. I had a similar experience this summer visiting my aunt in California who is in a care home. She has an illness with cognitive challenges and I hadn’t seen her since 2007 when she was full of life at my sister’s wedding. I didn’t know how to be with her so I just joined with her in the moment and it was wonderful to be able to make a connection with her. It was precious – I got to see here four times and she even came out with us one day. The power of being in the ‘now’ and being able to connect, as you are, with your Mum, when you see her, is a gift and although it may not seem so delicately wrapped – there’s real beauty in it.

My Grandmother had Alzheimers in her latter years. A fiercely independent woman, she became gradually unable to look after herself safely on her own. So she ended up in a care home. The staff there were wonderful. I did not visit her there. I was living up in Scotland at the time and did not make it down to Bournemouth very often. However Mum would relay stories of what she had been up to. One day Grandma would be a little girl, needing to get her books together to go to school. Another day she was working, needing to get ready for her shift at the hotel. Some days she would play cards with the staff. Others she would recognise people, such as the day she realised that her great granddaughter was the little girl in the pushchair at Mum and Dad’s anniversary party.

Luckily she did not become aggressive, as so often can happen with this condition. The staff thought she was lovely. This was demonstrated clearly when a whole lot of them came to her funeral, which was touching. I asked the supervisor John, what she had been like. His response was, ‘She was batty but lovely’. Grandma had loved life and lived it to the full (barbeques on the beach at midnight, swimming in the sea, parties). And although I wish she had not had Alzheimers, I know that she was surrounded by loving care in her final days. With people who saw the sweet lady I had known all my life.

Thanks Diane – so glad you have a lovely memories – yes, I think the staff at the care home should all be awarded medals for their patience and compassion and good humour. Mum does have her moments of aggression, but gladly, not too many.

Thank you so much for sharing this Nick. I so relate to your experience. My Mum died from Vascular debenture in 2011 and Dad died last year from Alzheimer’s. He cared for Mum at home until her final year. Like you I found both experiences really difficult and grieved for the people who had disappeared. Dementia is cruel.

I was thinking about your Mum’s birthday experience. Even though dementia sufferers lose short term memory, they live totally in the moment. Each visit, each moment shared is totally in the now. So for a few hours your Mum was experiencing something enjoyable amid the confusion, even though she can’t remember it. And that’s all she and you can do.

I’m sending love as you make your way through your Mum’s illness. All I can say personally is that as time goes on, it’s getting easier to remember Mum and Dad as they were before the dementia.

Many thanks for sharing your story and the difficult emotions that you have experienced. It struck a chord with me as my mother, also has dementia. She is 82 in a few weeks and went into a care home almost 3 years ago. If I look back, mum was showing signs of being unwell long before the diagnosis and for the time leading up to her admission, it was very clear that she was very unwell and also very unsafe to be left alone at home. To say it is difficult to see mum with dementia is an understatement, however one of my coping strategies is to remember that ‘she is happy for that moment in time’. so if she does forget that we bought her flowers, or she had a party for her birthday, then that is OK, because for that moment in time, she was in the moment and she was enjoying it.

Mum was a determined, strong and motivated lady on many levels and this still shines through. I believe she ‘comes and goes’. Sometimes when I visit with my husband I don’t think she has recognised us and then suddenly she calls our name proudly, introducing us to the staff in the care home, probably for the 50th time………. and that just makes everything OK.

We must keep the faith with our parents, support them, guide them and make sure they are cared for as they deserve. This I believe is the most we can do and in addition, be kind to ourselves, look after ourselves so that we can be strong for them.

Thanks so much Yvonne – so sorry to hear of your mothers deterioration – it seems we all have similar experiences – I have certainly felt quite alone on the journey so I am finding it very validating to hear other people’s experiences and realise our experience is both personal and universal – I wish you well with your journey